I am so bloody confused!!

Posted , 14 users are following.

Hi there,

I desperately need some clarification as I am going mad at the moment. I have been diagnosed with LS-BXO and told that if steroids and barrier creams don't work that my only solution is to get circumcised. This doctor argues that my condition has nothing to do with the immune system and that I developed LS from urine drips over time.

After this consultation, I decided to go see a functional doctor and she is 100% certain that LS comes from the immune system and that my condition can only be truly cured through fixing my body from the inside out and thinks that getting circumcised is crazy. Incidentally my white blood cells are very high so clearly my body is fighting something.

I am now stuck in the middle and have no idea what to believe anymore. Is it urine that is causing my condition or is it my immune system?? I am so afraid of this condition developing into cancer or spreading down my urethra or something.

Any help would be great!



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28 Replies

  • Posted

    I am sure you are confused! Posting on here is one of the best things you could have done, you will get lots of help here.

    Not all doctors agree about how LS comes about. I think it's an immune malfunction and so do lots of folk here.

    My advice(for what it's worth) is read the info here, inform yourself and stop worrying . I know, it's hard -about the cancer thing - we have all been there. There is a SLIGHTLY higher risk of it, but take care of yourself and examine yourself regularly and get checked regularly then you're doing all you possibly can.

    Take care!

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  • Posted

    This condition is autoimmune and enough women get it that if circumcision due to urine drops was the cure, then we as a gender are really screwed.

    Autoimmune is a condition from the inside.

    Read the many threads to get a good idea of how we are working diet into the relief.

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  • Posted

    Pete, I just did a fast search and see what you have is fairly rare (1 in 1000) and happens to uncircumcised males. So far you have had responses from women so the circumstances are somewhat different. I saw post by a male in an LS thread only once. Have you searched specifically for a thread for LS-BXO? Put it in the title. We women can share info, but it may be more helpful to hear from guys and what their experiences are, what treatments, etc. 

    Re what your dr told you, it sounds alarmist. "IF" barrier creams don't work? Does that mean you haven't tried them yet? Go one step at a time. 

    If the cause for the disease were urine then everyone would have it, right? It must be your body's abnormal response to urine, hence autoimmune makes sense.

    In my case I was told lack of estrogen has caused it yet younger females also do develop it. My dr stated LS is not clearly understood, not curable but treatable. I don't think there is any clear understanding of what causes an autoimmune response, but there is a whole list of them and treatments to control them.

    Some women with LS seem to have luck with diet, some with steroids, some with natural remedies. It can't hurt to change your diet, but maybe use a steroid at the same time. 

    But it is important that you find a knowledgeable doctor that you are comfortable with. Not someone leaping to extremes. I've had doctors do that in other circumstances and it is awful. Try to stay calm; stress only makes things worse. Ask the 2nd dr if you can opt for both treatments at once. 

    If you read the women's' threads you'll see that we are all trying different variations.

    Good luck. I'm sure you'll get it under control. MANY people are living with conditions that are controlled but not cured.

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    • Posted

      Hi Beverly, thanks for your message, yeah it’s bloody bloody rare but my doctor mentioned that I am much more likely to get it as I already have another condition on my penis which is where my pee hole has a bit of ski going across in the middle, so it basically looks like I have 2 pee holes on top of one another. I always thought this was normal until I was told otherwise. Anyway this condition means it’s much harder for me to get rid of all my pee and it tends to drip. I know TMI lol.
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  • Posted

    No wonder you're confused, and it's always going to be like that because no one really knows. Personally I think it's autoimmune. Re the urine drips, I notice that when I use a dilute alkaline spray (borax or bicarbonate of soda) after every toilet visit, I'm much better. I think it must neutralise the acid in the urine. I also go in the disabled toilet whenever I'm out (there are may ways of being disabled, and not all of them are visible), and wash just with some water on tissue so that there's no urine hanging about. It helps. On holiday recently there was a bidet in the bathroom - oh joy! I felt so much more comfortable. I don't think urine causes it, but if there is any hanging about, it can make you uncomfortable.

    Look at the thread, an experiment with borax. Look at diet and generally making yourself as healthy as you can, try not to stress, and remember that it is the rare person on here that has a doctor who really knows about LS. That's why we are here, to share the little bits of knowledge we have gained over living with this condition.


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  • Posted

    Hello my friend, I think I have responded to at least one of your posts before.  I will simply state my perspective on this (as I have posted about Westernised Medicine elsewhere) : -

    > The vast majority of Doctors educated in the Westernised Medicine discipline either have no idea about what they are talking about with regards to LS, or, they are deliberately being obstructive with the truth about what is going on with the vast majority of dietary regimes most of us follow (i.e. 'feeding' the profit making machinery) in the role of food being the primary causation of many conditions, such as Auto-immune Disorders.

    Therefore, there are relatively few Westernised Medicine Practitioners who will risk telling the majority of their patients with Auto-immune Conditions (and many other Disorders) just exactly what has caused it, and indeed, what it is they need to do to put it right (e.g. radically change their diet and achieve the correct balance of Vitamin and Mineral Supplements that will suit each individual).

    Essentially, believe what your Functional Doctor has told you, if you need to seek further information on LS / BXO and want to know what you need to do, I would certainly be returning to the Functional Doctor, not the  westernised medicine one.

    The choice is yours - for the majority of Men with LS / BXO, at best, westernised medicine can only offer a Steroidal Regime and to remove your foreskin - and, most likely, circumcision will give you little or no benefit, other than you will have less skin area to be infected, perhaps.

    Those from an alternative perspective - such as your Functional Doctor will work with you to find the best possible overall health result for you ......

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  • Posted

    OH PETE! no confusion necessary! the functional medicine practitioner you saw ha it hands down. I'm SO glad that weedugie also saw this post.  Believe him, and us who know better. work with your functional Doc. 

    and if you haven' before read up on the nutrition from teh inside article that I collected. Do NOT cut off your highly sensitive beautiful man parts! 

    https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033 ;

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  • Posted

    Thanks very much guys for the encouraging messages. Wee dugie, I know you commented on one of my previous posts and I am only after remembering now I never replied! Sorry about that!

    Your messages have made me feel a lot better as I feel in my heart, functional medicine and fixing my immune system is the right approach but after speaking to my

    western doctor on Friday I was nearly in tears as I’ve spent so much time and money fixing my immune system with a complete diet change and I felt it might be all in vain. I am so full of frustration and confusion as if it’s not hard enough going through LS and the affect it has on your life and relationships but then on top of all of that you are dealing with professionals who have completely opposite opinions and it’s so incredibly hard as I’m sure you all are all too aware.

    When I mentioned the idea of circumcision to my functional medicine, she actually laughed at the idea but I started to question all of this on Friday. What I have started doing as of today however is having my foreskin retracted every day. It’s quiet the experience in all the wrong ways but I feel it’s worth a try and see if my condition improves over the next few weeks.

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  • Posted

    I think, tweetmepete, that no one truly knows what causes LS.  But I do have my own theory that has proven to help get my LS under control.  

    When I started to rinse after bathroom visits with water in which a small amount of baking soda in the hope to avoid infection, I noticed to my surprise that the LS was stopped in its track.  Asking my doctors why this could be helpful two of them said:  your pH level.  Never did they connect that with LS.  But I went on using baking soda and ever so gradually the white thin threading melted away. 

    Next to that, I noticed that certain foods made matters worse.  It took a while to figure out:  no added sugar, no alcohol, no caffeine, no gluten and limited dairy products.  And furthermore - stick to real food, not the food that keeps forever.  

    Hopefully my experiences help you on you way in a different direction.  

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    • Posted

      hanny, along with LS I keep getting symptoms of BV, but it's fleeting. When I asked the gyn why this was happening she said the fluctuations of estrogen was throwing off the PH levels. So I am now using a very small amount of estradiol nightly along with a small amount of yeast cream. I might feel a little less sore or itchy but other signs persist. When I tried the baking soda it made me feel very dry. It could be because my LS is barely noticable if at all at this point. Instead I use a little bit of salt in the water if washing off. It is not something I do consistently.

      One thing I haven't tried is drinking cider vinegar. I know people claim that solves PH problems.

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